PAINTRACKING
Your Personal Guide to Living Well with Chronic Pain
By DEBORAH BARRETT
Prometheus Books
Copyright © 2012
Deborah Barrett
All right reserved.
ISBN: 978-1-61614-513-2
Contents
Chapter 1. My Story.....................................................................9
Chapter 2. Pain Positive?...............................................................13
Chapter 3. Why Paintracking?............................................................19
Chapter 4. Committing to the Process: Addressing the "yes, but ...".....................27
Chapter 5. Envision Your Personalized Paintracking System...............................31
Chapter 6. Tracking Your Well-Being.....................................................43
Chapter 7. What Matters: Measuring Explanatory Factors..................................55
Chapter 8. Learning from Your Own Experience............................................81
Chapter 9. Products, Practices, and Professionals: Where to Begin?......................101
Chapter 10. Strategies to Focus and Calm Your Mind......................................109
Chapter 11. Strategies to Soothe Your Body..............................................121
Chapter 12. Strategies to Shape Your Self-Talk..........................................141
Chapter 13. Strategies to Pace Yourself.................................................159
Chapter 14. Strategies to Improve Your Sleep............................................173
Chapter 15. Strategies to Exercise More Effectively.....................................181
Chapter 16. Collaborating Effectively with Your Doctor..................................199
Chapter 17. Strategies to Make Sense of Prescription Medications........................221
Chapter 18. Strategies for Working with Mental Health Professionals.....................255
Chapter 19. Taking Care of Your Home....................................................273
Chapter 20. Preparing for Holidays and Travel...........................................287
Chapter 21. Creating a Workspace That Works.............................................295
Chapter 22. Work Alternatives: Considering New Pathways.................................309
Chapter 23. Approaching Social Relationships............................................329
Chapter 24. Improving Committed Relationships...........................................345
Chapter 25. Navigating Parenthood and Other Caregiving Roles............................359
Chapter 26. Grief and Acceptance........................................................371
Acknowledgments.........................................................................377
Notes...................................................................................379
Index...................................................................................389
Chapter One
My Story
This is the book I wish someone had handed me when I first encountered
mysterious, overwhelming pain.
My pain began in June 1994, when I was twenty-eight and just weeks from
completing a PhD in sociology at Stanford University. In a push to graduate, I
spent long, intense hours at the computer keyboard, and, no surprise, my hands
and forearms ached. I assumed this would pass with rest, and I daydreamed of
the beach retreat I scheduled after graduation. But instead of easing, the pain
worsened.
As a break from my graduate work, I had become active in capoeira, an
Afro-Brazilian martial arts dance. During a fateful Tuesday evening class,
despite sore arms from typing, I goat-walked the length of the gymon all fours,
kicking up my legs behind me. As a fit, young woman with a naïve sense of
invincibility, I regarded the mounting pain as a challenge to overcome rather
than a signal to stop. The following day, I stubbornly persevered and lugged
four bags of groceries the two and a half blocks to my apartment. By the time I
reached the door, my pain was at the breaking point. I recall thinking it felt like
the muscles in my forearms had been severed.
Over the days and weeks that followed, a burning sensation climbed up my
shoulders and neck, across my back, and down the whole of my right leg. I had
no idea what had hit me. My body seared with so much pain that I was unable
to sleep and could barely take care of myself. My younger brother moved into
my apartment and became my arms: he typed and cooked, and as the pain
worsened, he even brushed my teeth. I summoned up the energy to visit multiple
doctors, but each was baffled or dismissive. I was desperate for help.
Instead of starting the postdoctoral fellowship that awaited me at the University
of North Carolina, I left San Francisco for my parents' home in Pennsylvania,
virtually incapacitated. I was unable to hold a piece of paper or turn a
doorknob. My parents became my caretakers, spoon-feeding me on my worst
days. Over the next year, my mother, a family physician, assumed the role of
medical detective, and my father became my stoic advocate. Together, we struggled
to make sense of my mysterious, disabling symptoms. With my parents'
support, I visited specialists who poked, prodded, and ran countless lab tests.
Each visit raised my hopes, but none explained why I hurt so much.
My mother, distressed by the extent of my suffering, searched the medical
literature until she found discussions of symptom patterns that mirrored my
own. Her investigations led to the diagnoses of fibromyalgia and myofascial
pain syndromes, which were confirmed by another round of doctor visits.
While it was reassuring to name the demons, the diagnoses brought little relief.
The prescribed medications produced more unpleasant side effects than comfort,
and the hands-on therapies, although pleasant, failed to sustain any
improvement. I ricocheted among pain-treatment programs, doctors, and
physical therapy clinics, with little progress.
I read everything I could get my hands on about chronic pain and my specific
diagnoses. Some of the advice helped some of the time, but just as often,
my symptoms intensified. Take exercise, for example, which was described as
essential to recovery. Often I felt good, even great, in the midst of a workout,
but soon after, my pain would skyrocket, landing me in bed for days. Much of
the advice seemed like empty words or unobtainable ideals. How was I supposed
to accept my situation or improve my outlook—a common piece of
advice—when I felt utterly miserable? I struggled so much, yet remained confused
about what, if anything, helped. I had never been so frustrated.
Every now and then, I would experience a moment when my pain felt
manageable. I rejoiced in these moments but had no idea what caused them. I
was plagued with questions: Why would I experience a pain reprieve one
moment and feel as if I'd been caught under a buffalo stampede the next?
What made some mornings drastically better than others? Were there medications
that would bring more substantial relief ?What determined the length of
my worst pain flare-ups? What sort of exercise would
really help? And most
important, how could I improve?
I came to see that the only way I could answer these questions was to don
an investigator's hat and track my own experience. As a sociologist, I was accustomed
to evaluating questions with systematic, empirical data. However,
tracking my pain was easier said than done. I detested the worksheets I had
been given by the pain clinic, which seemed to require me to detail my every
waking hour. I hated to focus the little energy I had on my problems. Still, I
made multiple attempts, and each time, I ended up tossing the worksheet aside
in despair. I eventually realized the problem wasn't my lack of fortitude but the
worksheets themselves. They demanded too much energy and neglected the
pieces of the puzzle I considered most important. Fueled in equal parts by desperation
and determination, I devised a simple tracking tool that I could fill
out in a few minutes each day to capture my specific concerns. Finding an effective
way to understand my experience has changed my life and is the basis of
this book.
(Continues...)
Excerpted from PAINTRACKING
by DEBORAH BARRETT
Copyright © 2012 by Deborah Barrett.
Excerpted by permission of Prometheus Books. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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